The Situation with D

I'm starting this post with no idea what I'm going to write. I'm not tired yet, don't want to watch TV, not inspired by the web, just kind of hanging. So I guess I'll just do a little update post.

D got out of the nursing home last Sunday. Finally. There were weeks of hemming and hawing about whether he was going to go back to RIO or what. I finally suggested that he set a deadline for himself to get out of there and just make it known to everyone that he is leaving on that date. And lo and behold, magically the paperwork got done. So he's home, an attendant has been hired and is in the process of getting paperwork together so she can start, and I will be going back to work tomorrow.

Health-wise, he is fairish. He still has the pressure wound and must stay in bed about 16 hours a day. Today he was going to come over but canceled for some extra time in bed because his wound seemed "angry" today and is acting up again. He sees the wound doc in a couple of weeks and we might be looking at a skin graft surgery as an option. It got a lot better in the time he stayed in the "home." It is a clean wound and is no longer infected, but it seems to be at a plateau and it just can't quite close up. He has home health nurses coming everyday now, so someone (with more expertise than me, please note) is monitoring it.

I've been kind of staying on the sidelines as far as his medical stuff since I got blamed for the amputation last summer. I tell him that I'm available if he needs something or wants to bounce something off of me, but I'm not really a major player in his care anymore. I'm open and flexible as to what I can do to help, but he is going to have to boss me around on it and tell me what he wants from me. The blame thing kind of freaked me out and I could either react by being over-vigilant and being a control freak and trying to handle every contingency, but I know that this wouldn't change all the things I cannot control and would make me more susceptible to blame in the future. Not to mention, bat-shit crazy. It is better this way. I know that I can't control much about this illness and either can he up to a point. I don't understand why when people's spouses get diabetes or heart problems or cancer or chronic fatigue, their spouses aren't blamed for making them ill but I was in this instance.

I probably shouldn't worry about being blamed for the foot thing as much as I do, but it is my disability slippery slope paranoid schizophrenia working overtime. First people say that I caused injury to a disabled person, then that gets around and suddenly I can't work in the field anymore, then that gets around and suddenly I'm not fit to raise my children...  It's just happened too many times that either someone has expressed concerned about my ability to do something related to my being disabled or I've made a minor mistake that gets blown out of proportion (Like that time I didn't hear a parent comment to my back in a PICU waiting room and I turned around and said excuse me and then I was suddenly too deaf to work in the PICU even though I did really well there because of my ability to communicate with vent-dependant kids because of my SPED training in nonsymbolic communication...but I digress). Then all of the sudden opportunities are ripped from me.

I mean, D has a serious chronic illness. He is 14 years post injury and has osteomyelitis. I don't put much stock in actuarial shit, but a guy with D's injury is averaged out to live only around 25 years post injury. That doesn't necessarily mean he has only 11 years to go, but it also doesn't mean that he even has 5 years to go. D's skin (which is a major organ) is failing, and it has been for years. Every compromise to his skin breaks it down in that area by 20%, I am told. Unlike a broken leg, it will never heal completely after the second or third ulceration. I'm not hopeless that it can't turn around and he can find some sort of workable balance between health and life, I pray everyday that he does. But osteomyelitis on top of skin failure on top of MRSA is a lot of stuff that even the best medical centers can't solve. I read somewhere that Christopher Reeve had, like 42 skin and bladder infections the last 2 years of his life, and he had the best medical and home health care imaginable. No one blamed his wife. It's the nature of the bitch called spinal cord injury. I'm not sure why in our case there has been so much finger-pointing. There are a certain number of things that we are in control of. Sometimes I just want to yell, "People! This is D! He is my life partner. The one I have loved for 12 years and he is in the process of slowly dying! Just can't you stop? Just can't you have a speck of caring and concern for the sactity of our family during this hard time? Just can't you give a damn about something other than placing blame? There. Is. No. Time. For. This."

Things like nutrition, proper exercise and rest, proper equipment (heh. as much as we are in control of that) are things that we can do something about. But it is just like a cancer patient. Good nutrition is great and may help, but there are no guarantees and if someone had a relapse with their cancer...hopefully you wouldn't be yelling at them because their wife got too much pizza delivered or whatever. Hopefully you'd be supportive. D's osteomyelitis is the same way. Likely it is going to remiss and relapse and remiss and relapse. We can only hope that the remissions are long and the relapses aren't too serious.

So, with the new role as parents and the health problems and the family breakdown, D and my relationship is changing. It's not a bad thing. We are not mad at each other about it or anything...we are still okay. But we are going through some growing pains. My attention has to be balanced between him and the kids, and that means that he needs to take more responsibility for himself. I think he will do it, and I think he will be happier for it in the end. I've asked him for some things I need, and he is working through it to see how he can give me those things. In a very simplified nutshell, I've asked for:

1. That he take the lead on his health and make it as manageable as humanly possible.
2. That he not lie anymore. To be fair, he is not bold-faced lying to anyone, he has been doing what my friend, Nik, calls 'editing.' Which we all do a little bit of I suppose. (I should probably learn to do more of it!) It is when you tell different people what you think they want to hear instead of what you really want to say. D is a master of this. I've sat with him in the hospital while the Catholic priest comes in and he convinces that priest that he is Catholic. Then a born-again evangelist volunteer comes in and he implies that he has been born-again. Then my Unitarian minister comes in and he is all Unitarian. He didn't lie to any of them, just showed them the part of the elephant he wants them to see. He edited. I don't care about this in terms of religion. Where it becomes a problem is when he bitches and moans to me about his family and says specifically that he doesn't want X, then turns around and tells them all is wonderful and he LOVES X. I don't care whether he likes X or not, I just want him to be honest about it. He sometimes does it with health care workers as well, which is basically what occurred which the foot fiasco and is obviously detrimental to his health.. Anyway, I can't sort out what is what anymore, so I told him it has to stop. At least where I'm concerned.
3. He has to start prioritizing. His health should come first, of course. Then he needs to decide what he wants to do with the rest of his very limited time. I see that as being a balance between work/school and family. Family being my/our family. Despite my whining about his relatives, I am in no way implying that he not have a relationship with them. He has years of history with them before me, and they are his parents/brothers/sister. So, in no way am I saying, "its us or them." As much as I've let them hurt me, being mad at them is like a wife being mad at the mistress rather than the husband. Even if she is a crazy bitch, its misdirected and pointless. All of this comes down to me and D and how we let it affect our relationship. (Did you know that in-law meddling and rejection is the third leading cause of divorce behind money and adultry? There should be a support group!!) Anyway, What I am saying is, if you have a limited amount of time in which you can go visiting or spend time with people, are you going to spend it all with your parents, brothers, etc. every chance? Or are you going to spend it with your kids? My druthers would be that, when his health permits, he does the following: He calls here everyday and gets an update on the kids and talks to them on the phone. (They really like listening on the phone, but haven't quite figured out that they can talk back yet.) Then, I would see him when I work for him about three times a week, and one or two times a week he either comes here or we go do something together as a family. I'd like for us to have dinner together as a family several times a week. And then, sure, every once in a while (like no more than once a month or so unless the sky opens up and a rainbow comes out and his health is better and he all the sudden can be active for 20 hour days) he can go spend some time with his family, and of course call them whenever as well. Now, this is what I want, but it is not a demand. I'm not going to point a gun to his head and make him choose to spend his time with us. So he needs to decide which is his 'nuclear' family. If he chooses that he wants to spend his very limited amount of time with them, so be it. But then I need to know that when the kids are young so I can better set them up with the proper expectations of what this guy is going to be in their lives. Is he just that dad-buddy guy who comes and visits every so often like a divorced father might? Or is he an integral part of their lives. I just need to know how it is going to be. I'm not going to constantly be fighting about this.
4. Along those lines, I need commitments to be followed through. Now I can be flexible here and there if there is a health emergency or something. But if he says he is going to show up. He needs to show up. And not 3 hours late. I'm not doing that to the kids. I'm not allowing it. Right now, even though their concept of time is nil, I NEVER tell them ahead of time that we are going to see dad. Because I don't know if he will follow through. So if we see him, great. It is a surprise. If we don't, we go on with our day. But I don't think this method is going to pan out as they get older. There is the whole positive role model issue with that as well.
5. I need for him to find at least three other resources to solve a problem that aren't his father. I'm not saying that his father should never help him, but he should be last resort, or only for specific circumstances. This is for a lot of practical reasons as well as emotional ones. His father is getting older and D does need to learn how to find other help. There are attendants, the internet and UPS, friends, volunteers, people for hire in almost every instance. It takes some organizing to weave this web of support, but he will be better off doing it now rather than later, and I think his father will rest better, too. He needs to learn the skill I call "plan A, B, and C-ing it." Yeah, by the time you get down to plan C, it is less convenient. But I think dear dad needs to be plan D-ed in most circumstances. That isn't a put-down of D's father at all. It's just life and how it needs to be. When you are disabled, or when anyone has a really big job that they need lots of help with for the long term, it almost always works better to have more people taking on less of the burden each than one or two people with the full load. It does take delegating skill, but spreading the need around is usually the way to go to get through the long haul for most disabled people.

So there's my list of what I need. I'll give this a few months to settle with D until I decide what to do next. He is a good person with a lot of great qualities. I haven't written about him much because this last few months really has been hard for us. Someday, I need to write out all the things I love about him. He was most excellent during my pregnancy and right after, it has been this health crap that really threw a wrench in things as we were trying to adjust to our new roles. He really loves the kids and is really good with them. And they love him as well. My general rule is that when people love my children and are good to them, I will not take that away from them. I'm going to do whatever it takes to work it out. My father is a child care goofball but he loves them so I work with that (and never leave him alone with them unless they are sleeping.) D's father is a very loving person in a very difficult situation and we've talked a lot about the family problems and are trying to do our best so he can continue to have a relationship with the children. I've offered to make arrangements for D's mother to see the children and not have to see me, but was told she didn't want a relationship with them so no love lost there, I guess. But I'm willing to try my best to work out these difficult situations when it is obvious that the other people are also trying their best and are coming from love and caring. I know D comes from that place. I've not given up on him yet.

I think that there is hope. Hope for D and his health. Hope for D and me. Hope for us as a family. I have at times asked myself if I made a horrible mistake in agreeing to him wanting to co-parent with me. But I don't think I did. Besides, I see it as the same as someone who agreed to have sex with me and I got pregnant. It's done. Let's work with what we've got. And despite all of these sometimes overwhelming health and family challenges that have come up in the last year, we have a lot. Most importantly, we have life. Each day D is still alive I am thankful. I have fully prepared myself (well, not fully, but as much as you can) that D could go at any time. I have experienced death enough that I now mentally brace for that call. Or that visit when I walk in to find him gone. I know it will happen someday. Hopefully not anytime near soon. Even though I've played the role of caregiver for him, my job has always been less about being able to save his life physically, and more about giving him access to life emotionally and spiritually and giving him someone to share it with. I'm trying to find that balance between giving him this, in part through my children and fatherhood for him, and also balancing the needs of my kids for strong, trustworthy people in their lives. Not to mention making sure that I get what I need in this relationship. The balance has shifted because now, in that equation, I will always err on the side of my kids.

Sigh. But, we are still working on it. Still trying. Still loving towards each other. I still have faith.

And that, my friends, was a big long confessional for someone who was just hanging.

Comments

[abacus]

I agree with it !!!

[rossecorp]

Wow. What a thoughtful and loving post--loving of yourself, of D., of your children, and even of D's family. It sounds like becoming a parent has changed you! I hope D. can come through, but I have no doubt that you will be a strong and successful parent.